Counting on the generosity of the crowd

Startups use crowd-funding to aid patients, nonprofits

  • Scott Burkholder and Michael Owen run the Baltimore Love Project, a nonprofit campaign to spread public art -- in the form of the word "LOVE" -- across Baltimore. They recently had great success using a website called Kickstarter to raise more than $6,500 for the creation of a new mural in East Baltimore.
Scott Burkholder and Michael Owen run the Baltimore Love Project,… ( screenshot )
November 13, 2011|By Gus G. Sentementes, The Baltimore Sun

Robert Stone was a healthy baby until he was 13 months old. Then, over three or four days, he became unresponsive and lost the use of his limbs. His bewildered parents put him through one medical test after another, each yielding inconclusive results.

The tests have remained mostly inconclusive for the past 13 years. The next step for the Stone family is to pay to have the boy's genetic material mapped in an attempt to find the cause of his illness. But that costs a minimum of $7,500, and insurance doesn't cover it.

So the family has turned to the Internet and a new Baltimore startup — a nonprofit founded by a Johns Hopkins University graduate student — for help.

Using the increasingly popular approach of raising money via the Internet, the nonprofit Rare Genomics Institute has built a website that promises to help families such as the Stones raise money to fund costly genome sequencing.

"It's a little scary to ask people for money," Robert's mother, Jeneva Stone, said of the crowd-funding. "But if we can get 750 people to give $10, surely we can find that many people. I think it's an interesting idea, and [my husband and I] are both willing to give it a shot."

Several similar websites, such as and are helping artists, musicians and nonprofits run campaigns to tap online giving. Such sites have helped raise millions of dollars and are redefining how people launch new business ventures and philanthropic endeavors, according to giving experts.

The sites encourage people to tap their online social networks to promote their own campaigns, or those they care passionately about. Rare Genomics is one of two nonprofit startups launched in Baltimore in the past few months that use crowd-funding to benefit medical research and philanthropic projects or individuals. The other is, a site where local nonprofits can run brief campaigns to raise money for specific projects.

"You don't have to be Bill Gates to make a difference," said David Lam, vice president of strategy for Washington, D.C.-based, which has funneled more than $52 million to nonprofits since starting in 2008.

"You can be someone who cares about helping someone else," said Lam. "Even if you give $10, that's a good step. And if you can recruit other people and help fundraise, that's even better."

Jimmy Lin, the founder of the Rare Genomics Institute and a Hopkins Ph.D. and medical degree candidate, wanted to bring the crowd-funding model to undiagnosed or rare diseases. They number in the thousands but don't attract as much attention from government and university researchers, foundations and biopharmaceutical companies. Lin launched last month.

Lin and a team of research volunteers he assembled hunt for so-called "mystery genes" that could explain a patient's undiagnosed ailment.

"The traditional funding model from the top down [for government medical research] or from foundations is very hard to reach these patients," said Lin, 32, a native of Taiwan who has been studying in Baltimore the past 10 years. "There's a funding problem, and because of the funding problem, there's a lack of researchers studying these diseases."

"We not only help with the funding," added Lin; "we provide links to researchers and physicians."

So far, the site features three children, including Robert Stone, whose campaign has $230 of the needed $7,500. The Stones were introduced to Lin through another mother whose child has an undiagnosed condition.

Lin hopes to attract more families, help them raise money and link them with a team of volunteer researchers that he's organized to work on their genome sequencing and testing.

Lin plans to seek foundation funding to help with startup and operational costs, and people who visit the website can donate to support Rare Genomics' overall work, in addition to individual children's campaigns. Rare Genomics allows the patients to keep 100 percent of the donations they raise; typically, crowd-funding sites take a small percentage of the money raised as revenue.

Lin hopes to fill a need within the loose-knit community of families and researchers who work on undiagnosed diseases. The National Institutes of Health recently launched the Undiagnosed Diseases Program and invited people with such conditions to be tested and studied.

The NIH program drew so many applicants that the organizers had to suspend the application process in July to give themselves time to sift through hundreds of applications. The program has spots for 500 patients, but more than 1,700 people applied.

Advocates say it's not clear how many people suffer from unknown ailments because the terminology varies and there is no central data-gathering effort. Amy Clugston, founder of Syndromes Without A Name, a national nonprofit and support group for families, said that Lin's effort provides a much-needed resource for families.

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